Thursday, November 20, 2014

VP Shunt surgery delay, admitted for INR pre-surgery.

Today's surgery was cancelled due to to high of INR (how thin the blood is) which really sucked both since surgery had been rescheduled once before and bc I was already in pre-op. I knew whatever an INR draw showed yesterday though wouldn't represent today since my last dose of Coumadin was Monday so had figured it would be within a 'surgery safe' range atleast by this morning, 3 days off the med. Not so much, the level was 2.2 and "safe" is 1.5 or under it seems.
Thankfully once my Neurosurgeon came up to Pre-op she was able to sort out a alternate not quite bad plan - she was able to admit me to D6-4 (Neurosurgery floor) with the plan to give Plasma (FFP) and Vit K this afternoon in order to bring down the INR with surgery as an add-on case tomorrow (meaning we won't know a time and could be anytime during the day).
It definitely sucks to be here another day and for surgery to have been cancelled but grateful Dr.Bragg was able to be flexible and work out a plan to go ahead with surgery.. I just want it done!?!
Admittedly and this is quite stupid but this is the shortest I've ever had my hair during a shunt surgery so that part makes me a bitt nervous ie how noticeable is it going to be (the incision, small shaved area, like I said stupid) but non-the-less feeling better would still be better..

"I have a hard time sometimes explaining my Providers (and frankly how annoying it is sometimes) to family and sometimes friends and yet how in many aspects these same Providers have been great for my care and are very good on my Team. I know my Mom doesn't hold it against me but dang I seriously was not the nicest (lost my cool, said I wasn't talking about it anymore in trying to explain something when I could have just said something differently in a better tone) and admittedly we both where probably over tired and frustrated about surgery being cancelled again but still on my part not one of my awesome moments! There's reasons I am not a morning person I guess.
The reason I share this really is one of my Pastors from Church had emailed this morning regarding surgery and postponement and said something along the lines of "God most certainly given you a lot of patience. You may not agree with that, but trust me...coming from an outsider's perspective, you have been blessed with a LOT of patience. What an example for the rest of us to learn from!"
I thought that was ironic to read after feeling so frustrated this morning but at the same time I sent back a message saying I appreciated the kind words and vote of confidence! It's nice to know people believe in you I guess or think that you deal with things well?!?
The Plasma is being run now to bring INR down with the Vitamin K will be given in oral form, low dose (hopefully that in turn won't affect to much our ability to get the INR back in range once released from surgery/in-pt!) - Vit K is notorious per my Cardiology Team for having longer term affect on INR manageability.
It's ironic really that after 3 days off the Coumadin (blood thinner) my level would still have been so high (normal for a mechanical heart valve pt. but to high for surgery) given we (my Cardiology Team) and I typically seem to have a somewhat difficult time keeping the level within the acceptable range - more often than not in the past 6mo. it has been to low vs. to high.
In the future for surgeries I think I am going to question my Cardiology Team about testing INR the week before any planned surgery so we'll have a better idea where my level is (to low, just right or high.) Doing an INR would mean we could perhaps better tailor when I stop the Coumadin according to that Lab result vs. this time we hadn't done an INR since the 1st wk of Nov. and so had no real idea if my level would be 'good' and just planned the stopping according to AHA/ACA guidelines - my Cardiologist and PMD suggestion as in the past.
The last surgery I guess I had kind of forgot about it but I think we may have stopped the med 5 days prior to surgery (Neurosurgery suggestion) and the surgeries before that I was pre-admitted the day before (for other reasons I think scans or something) and so we had an idea if INR would be ok enough the next morning. Those surgeries we had to give Plasma the morning of surgery.
I will close on a somewhat positive note that although my cough (from pleural effusion) is cont'ing to hang on tight, worsening as the day goes on my INR when re-drawn some hours after this mornings had already dropped from 2.2 to 1.9. The Plasma should bring it safely down the rest for tmrw!?
I close this praying for a safe surgery tomorrow, thankful for my Neurosurgeon and thankful for my family and those friends who continually check in on these surgery days!
Thanks for stopping by, God Bless,
Erica

Thursday, November 13, 2014

PFTs/breathing, Shunt surgery, PMR/botox

I'm not sure what made me realize or think of it but the Pleural Effusion symptoms that have been occurring for some weeks (with the cough that has been occurring for the past 2-ish wks) is the same symptoms that occurred for weeks after the 2nd OHS (open heart surgery). - I'm not sure what the deal is but the symptoms ebb and flow throughout the day, seemingly the worst at night. Definitely annoying and really wishing would improve or go away... Surgery is next Thurs and makes me a little nervous.
Apparently the consensus atleast between my PMD and Peds Neurosurgeon is this Pleural Effusion is caused both due to the TPL Shunt and partially heart related. Last year with these symptoms the TPL Shunt was temporarily re-routed to drain (along w the VP Shunt) to the peritoneal cavity so it would seem it was different causes each time?..
Overall I've not heard anything regarding the PFT results from Cardiology nor if they have a problem w the surgery going on, though they are aware it is next wk. (my PMD wants their blessing on the shunt surgery going ahead). I guess or would imagine they'll likely give myself/my PMD the ok before next Thurs or give us the PFT results but would indeed be a relief to know sooner than later. I don't imagine they have a problem w the surgery given the NP didn't seem to think there would be the other wk but there's also been somewhat mixed communication regarding the PFts and f/up. Non-the-less i'll just be happy when the surgery is over (hopefully next wk) and dealt with.
As far as the blood thinner (Coumadin) i'll take the last dose of that on Monday which gives 3 days prior to surgery though haven't heard if they'll require testing the day before of just test the morning of surgery (during the 2 hr pre-surgery time). Generally INR should be low enough within that 3 days range though last time (unsure if it was related to General Surgery working w my Nrsgn) they required the level to be within the "normal" range whereas other surgeries Dr.Bragg/Anesthesia has just done Plasma ahead of surgery if the level wasn't low enough.. Unsure this time.

The PFTs (breathing tests) where yesterday (Tues) with 6minute walk test and seemed to go relatively ok. I didn't ask the Tech what her opinion was but asked my Cardiology Team to to send the report to my PMD (outside medical center) and to let me know if they'll clear for the shunt surgery.. Per my PMD and her having apparently talked with Dr.Bragg last wk Dr.Bragg wants to go ahead with surgery if possible. I am sure hoping we can just get it done.

PMR F/up - Botox
Today (Thurs) was 3mo f/up for Botox (spine spasticity; botox injections calm the c-spine, thoracic and shoulder muscle signals from becoming overly reactive). Overall Dr.C did 15 injections at the various points trying a different strength to see if it would have the same benefit. Follow up once again in 3months. She commented that some of the muscles seemed more tense/tighter than normal, asking if I'd still been doing massage (Physical Therapy) which was a little surprising she could tell but I have not been to PT for a little over a month. It always surprises me how many of my Providers can really tell a significant difference between when I am and when I am not actively doing PT.

I'll update when/if I hear anything from Cardiology or my PMD or otherwise if anything new comes up regarding the VP Shunt surgery.
Thanks for stopping by,
Erica